Bliggity Bloggity Boo

I can't think of a blog title, so thats all I can come up with. Well hello blogging world. It's been awhile. I know.  My mother reminds me daily. Her little voice in the back of my head "You need to update the blog. People are asking" (Really? I doubt that).  Anyway....we've had a busy past couple of weeks. Landon got sick again with bronchitis. I made him wear a mask and gloves around the babies for about 5 days. He seems to be doing much better now. We've also had lots of visitors over the past couple of weeks from grandparents, family, friends as well as more dr appointments. We've gone to Halloween parties and pumpkin patches and my old work...and celebrated 5 years of marriage!  It's been busy but fun. Kaylan's current weight is 7 lbs 8 oz! Dylan is tipping the scales at 12 lbs 12 oz. He's quickly growing out of clothes and we're lucky to get one or two wears out of some things. We've got Kaylan's eye exam tomorrow morning so please be in prayer for that. That's no fun for babies. Last time, her eyes were a lot better, and this is a follow up to make sure things have stayed that way. I can't believe it's November. It's actually time to start thinking about CHRISTMAS!! Wow - CHRISTMAS!!! It's been a crazy, long, last year. Last December, I found out I was pregnant (Dec. 18th to be exact) ;-) Alot has happened since then. This is going to be a very special Christmas and I'm looking forward to cozying up with Dylan and Kaylan and Landon!  Hope we get snow again this year. Last year when it snowed, we wrote in the snow "We're having Twins!" I'll put the picture below along with some current ones. Happy Monday to all!

My anniversary present from Landon! :-)



Seven Pounds

Seven Pounds. Good movie, right? Will Smith...big blockbuster. You know the one....Awww...that's not what I mean by seven pounds! Kaylan is 7 pounds!! Well....ok, not exactly seven pounds...6 lbs 15 oz (But who wants to title a blog 6 lbs 15 oz). Anyway, we went for our weekly weight check and that is her current weight. We were really HOPING for 7 lbs, but she's only 1 oz away, so maybe by the end of the day, she'll officially be there. Over the past week, she's averaged almost an ounce a day, so we couldn't ask for anything better than that! She's been feeding better the past few days too. All in all, great week!

Dylan is growing like a weed and eating like a horse. I love these pictures of both of them :)

Finally - Game 6 tonight....come ON RANGERS!!!!

"Is this the famous Kaylan?"

First, let me say, I have completely failed in my commitment to maintain the blog since Kaylan has been home. Apologies for that. I ask for grace as we adjust to this new life with two babies at home. Bear with me...I'll get there. Now that I have that out of the way, here's today's update.  We went to the cardiologist today for Kaylan. Part of her discharge instructions were to see a cardiologist to check on her PDA (heart murmer). Many times, babies with heart murmers need surgery to close the open duct in the heart....other times, the duct simply closes on it's own as the baby grows. As of just a few short weeks ago, an EKG revealed that the PDA was "large to moderate" in size and needed to be watched closely.

Today, no murmer, no PDA. It's closed. Praise God! The cardiologist did an extensive sonogram on Kaylan (side note - kind of ironic to see my baby girl getting a sonogram of her heart...made me think of all the sonograms I had while she and Dylan were in me). Anyway, the doctor did another EKG and really spent a lot of time looking at everything closely. She didn't see or hear the murmer. What a HUGE blessing! She asked that we come back in 3 months simply as a follow up to make sure it's still closed.

While we were there today, the doctor came in and said, "Is this the famous Kaylan I've heard so much about?" (I think Kaylan was some what of a celebrity in the NICU). This cardiologist had looked at many of her EKGs and sonograms while she was in the hospital. Another thing she said (after seeing Dylan), was "Oh, I had no idea she was a twin.". (That's not the first time we've heard that either). Poor Dylan...just sits quietly in the background...along for the ride while sister goes from one doctor to the next.

Today is my first day on the job alone...solo...me verses two babies. Whew...The situation is under control at the moment. Both babies are sleeping peacefully (we'll see if that's still the case by the time I finish this blog). Landon took off work for a week to help when Kaylan came home. He is sooo incredible with the babies and they both just love him. Kaylan can barely take her eyes off of him. I miss his help during the day, but I've got to learn to manage from 8 - 5 on my own ;)

Next up....pulmonologist (lung doctor) for both babies next week. Until then...GO RANGERS!!!

The Event

If you watch much TV, you may have seen a preview for a new show on NBC called "The Event." I haven't watched it , but I can tell you that our trip to the pediatrician's office yesterday with the twins can be described as "the event." Getting myself, and two babies ready (with Landon's help of course) was a workout. Our appt was at 11 a.m. and we were up several hours earlier starting morning routines, feeds, diapers, etc. We actually got out the door on time, but by the time we reached the end of our street, Landon realized he forgot his wallet and I forgot my purse. We made it to the doctor office on time. I think I'm so used to just jumping out of my car, slamming the door, cell phone in hand and running into wherever I'm going....Not any longer....No, we became "that family". You know the one...the one that you are waiting on their parking spot, but they have a stroller and 12 kids and 32 bags. Yeah, that was us yesterday. We busted out the double stroller (or the twin limo as I call it) and snapped in two car seats and a diaper bag. We managed to do this while Kaylan and Dylan slept through it all. (Thank God). The pediatrician visit went well for the most part. It was Kaylan's first pedi visit post discharge so we had to go through her history with the doctor (which took a LONG time as you can imagine). When I filled out the new patient paper work, there was a question that said "Has your child ever been hospitalized and if so, what for?" I was tempted to write "see attached" and staple the 40 page file folder I had in my purse.

Kaylan and Dylan turned 4 months yesterday. That means one thing - 4 mth shots at the doctors office. Now, I must say that I've always heard about moms crying when their babies get their shots and how awful it is. I always thought "Well, I've had two babies in the NICU - a couple of shots isn't gonna bother me at all". Um, I would like to apologize for ever having such a thought. I think I cried as much as Dylan and Kaylan did. And the worst part, I had to HOLD THEIR ARMS down while the nurse put 3 needles in their legs. It was the worst, most heart breaking crying I have EVER heard. Landon stood over in the corner and got to be the comforter after the shots while I held down the next one's arms...Ummm.....I told him he can take them to the SIX month shots. That was horrible! All day yesterday Kaylan and Dylan were sleepy, sore and sad. We gave them Tylenol and let them rest most of the day. Today should be better.

Dylan's weight is up to 10 lbs 15 oz (almost 11 lbs) and he's 22 1/8 inches long. Kaylan is 6 lbs 7 oz and 18 inches long. She has only gained an ounce since discharge so we were a little disappointed about that. The dr is having us come back this Friday for another weight check.

I just want to take the opportunity to thank everyone who has prayed us through this time with Kaylan and Dylan being in the NICU for so long. We've closed one chapter and are beginning a new one....but it's still going to be difficult. We will commit to keeping you updated on their progress and we ask that you commit to continuous prayer. We are thankful Kaylan is finally home, but we still have a LONG road ahead. She has home health care coming out twice a week for 3 weeks just do to weight checks...Early Child Intervention will be coming starting this week. We'll be seeing a nutritionist, a pulmonologist, a pediatrician, cardiologist and and opthomologist all within the next 30 days. She's going to be getting a lot of medical care as an outpatient. We need lots of prayers for this new chapter. If she does not gain weight, we'll be right back in the hospital and have feeding tubes put in. We do NOT want that.

Thank you for all the encouragement, cards, letters, blog comments, meals, text messages and phone calls. It helped us survived the last 120 days. Here are some pictures we've taken since Kaylan has been home....Reunited and it feels so good....

Kaylan's Journey...

I have put together a little video testimony of Kaylan's journey.  It has been the most incredible experience we have ever encountered.  (I feel like the words to this song were written solely for us on our faith journey.)  God is faithful...

Best if watched in full-screen

T minus 24 hours!

Tomorrow! Tomorrow! I love you...Tomorrow...You're only...a ...day...awaaayyyy!!! YES, we are bringing Kaylan home tomorrow!! She's had a great week! She's gained a considerable amount this week and we are so excited. She's about 6 lbs 6 oz now and will be very close to Dylan's discharge weight! She's feeding much better and has made it known she's ready to come home.

T minus 24 hours! Let's do this!

We're ready! We're excited! We're ecstactic.....well, Dylan's face below pretty much sums up how we all feel about it ;)

Weight Watchers

We've been holding our breath for a few days watching Kaylan's weight. Every night, we call the NICU at 9 p.m. (shortly after they weigh her) for a report. She's been up and down and up and down. This past week, she's been losing more steadily than gaining, thus keeping her from being discharged. She's actually completed everything she needs to do for discharge...car seat study, "going home" pictures, no oxygen, completing bottles. Now, she just needs to gain weight consistently. Tonight she gained 28 gms (that's almost an ounce). PRAISE GOD! If we can get a few more days like this, she'll be outta there and at home where she belongs!  And now for the best news of the day, she had an eye exam this afternoon in which the eye doctor said everything looks a lot better.  He now wants to follow up with her again in about a month but the big praise is that things have improved.

As we start this final (hopefully) week in the NICU, please be in prayer for good solid, consistent weight gain. She's also struggling with keeping her food down too. And I don't mean just your typical spit up...we're talking, full out purple face, dry heave, projectile throwing up. It's so sad and I hate it for her. We need her to keep it all down. Poor thing, she's got tons of extra calories added to her milk as well as some serious thickener so she can handle it. She's got acid reflux something awful and well, feedings are just going to be rough for us for awhile. She can not be put flat on her back after her feed or it all comes up...So, looks like we'll be staying up a lot at night holding her and rocking her and keeping her upright. (Don't think for a second I'm complaining about that) ;) I'm longing for those days!

We are hopeful that this will be the week. Please, please, please say some extra prayers for her and us this week. I've had some good Mommy/Kaylan time this week and I am so ready to have her home. I talked to her a lot about how right now she needs to gain weight...and later in life, if she wants to be "that girl" that just "loses" weight so easily, than by all means, go for it. Right now is the time to get fat and happy.

While most of our posts lately have been about Kaylan, you should know that Dylan is still doing awesome. He's the smile behind every tear and he makes me so proud. In our unscientific weight check for him the other evening, he weighed in at 11 1/2 pounds..He's a chunk and he's doing awesome. :) He watched the Red River Rivalry with his buddy Noah this weekend. (See pic below). I also added a few others of Kaylan as well as me with my favorite nurse, Darla! :) Love her!

Hampster Cage

Because I don't have the mental energy to write a long blog, this will be short. Here's where we are. Kaylan will be in the hospital awhile longer...not really sure yet how long. She's not gaining weight. They can't discharge a baby that's not gaining weight. They've upped her calorie intake but she's not tolerating it well and she's throwing up most of what she consumes. I feel like I'm spinning my wheels in a hampster cage. They are calling her "failure to thrive" (google it). If we can't get her to consistently gain weight and keep down the volumes she's taking in, then we'll be looking at other options like coming home with a G-tube (surgerically inserted feeding tube). That's obviously not what we want, so we'd rather her stay in the hospital awhile longer and try to get over the next hump. Once she comes home, we want her to STAY home.

We're battling with the Lord every night for her. Please do the same with us. She needs the prayers. I don't want my faith to experience "failure to thrive".

Sooooo close....

Wow - what an AMAZING turn of events in the last 72 hours for Kaylan. It's been an emotional weekend! Kaylan had a second swallow study on Friday. It was determined that she has been aspirating on the half nectar thickener....thus causing the "wet" lungs and also causing difficulty in breathing. She's now on nectar and a half (think syrup in your milk) and that seems to be the magic potion. Since she's now on this thicker thickener, she is OFF OXYGEN --- that's right...NO OXYGEN!!! She's been off of it since Saturday and doing great so far! We are praying that she has kicked the canula and will be coming home tube free!! She's also now taking 8 of 8 feeds via bottle. She pulled out her feeding tube tonight (I think she might be trying to tell us something) :-)

If all goes well, she should be home by the end of the week. I can't believe I'm actually writing that sentence....the doctors ordered the car seat study for her so that's one of the final steps before discharge. We are so excited we can hardly stand it. We know that we'll be trading one type of "hard" for another, but we will be so happy to be DONE WITH HOSPITALS...hopefully for GOOD!

Please be in prayer for these specific things this week:

1) Kaylan to continue feeding comfortably and complete bottles
2) for her oxygen and breathing to be managed without any assistance
3) for her to continue to grow and gain weight and develop appropriately

We are looking forward to posting some pictures of our babies together again instead of all these individual shots. Here's to hoping that the next blog post is called "Coming Home!"

Springs...

What an incredibly exhausting week! We are quickly approaching 4 months with little Kaylan in the hospital and it has not gotten any easier. In fact, it seems to be getting even harder at times. We are so worn down from the multiple daily trips to the hospital, normal life routine, and taking care of a newborn. It’s a level of exhaustion that’s new to me. It’s beyond a mental and physical tiredness; it’s a fatigue that seems to have crept in to my soul. Sure, there are times when I have good nights sleep or get some good rest, but the routine of not only dealing with life, but having to process and internalize Kaylan’s recent analyses and diagnoses has really crippled our energy levels.



After almost 5 weeks of hearing “she just needs more time” from the doctors, they finally started an aggressive approach to finding out what is wrong with Kaylan and how to go about treating her. Now that she is finally on 3 medications including a diuretic and Prevacid, they performed another swallow study to try to figure out why she isn’t able to consistently complete her feeds. They did a series of trial and error thickeners and nipple sizes until they think they’ve cracked the code. It turns out that she had been aspirating on her feeds so they’ve upped the nectar content to slow the milk down so that she can handle it. So far, it seems to be working, but we are only a day in, so we will have to see. We are just glad that they are finally doing something to help get her home.


I was raised with the idea that faith is a constant. You either have it or you don’t. There is no in between. It is like a brick. Concrete. Absolute. Firm. Always solid. I am learning that faith is much better described as a spring or a bungee cord. There is time for expanding, stretching, growing, accepting. And there are times for contracting, questioning, giving, challenging and then repeating. I am leaning that Brickianity, for me, does not work. The minute I have God figured out with my definitions, my timetables, my expectations, my nice lines, then I am no longer dealing with God. I am dealing with someone I made up to fit my wants/needs. Someone I can control. Over the past few months, Brickworld, for me, has crumbled and I am learning to live with the faith of springs. Not my timing, His.

So as we continue to muster up energy to handle the craziness of having 2 babies in 2 different counties, I am being streched like a spring.  But as I am learning, spring-like faith is much more real than that of a brick. 

Pulmonary A-whata?

Pulmonary Edema and Respirtory Acidosis. (Now say that five times fast). That's the latest on little Kaylan...So what is it and what does it mean? Well, a Pulmonologist came to see her on Monday (that's a pediactric lung doctor). They ordered a chest x-ray to see if they could see why she was still needing the oxygen. The x-ray came back showing that the lungs looked a little "hazy" or "wet" as he called it. When he examined her, he still heard Kaylan's heart murmer and said he suspected that blood was flowing from left to right and spilling into the lungs a little bit causing them to be "wet" or "hazy" -- better known as pulmonary edema. He ordered an EKG (heart sonogram) for Kaylan to see if his suspicions were correct about the murmer/PDA. The EKG was reviewed by a cardiologist who said that she still has a large to moderate PDA (open duct in the heart that should be closed by now). Soooo....now, they have started Kaylan on three medications - 1) a diuretic that will make her pee and poop a lot and get rid of some of the fluid in her body and on her lungs. 2) Prevacid for Acid Reflux (FINALLY - I've been begging for this one) and 3) a steriod inhalent called Flovent to help with inflamation of her lungs (it's very similar to an asthma medication) - it comes in an inhaler. They put a little mask over nose and mouth and puff the inhaler in her mouth and into her lungs. This will help with the respirtory acidosis whereby she's not getting rid of all the CO2 in her lungs when she breathes out.

With these three changes we're REALLY hoping we will start to see some big improvements in feeding AND breathing. The downside is the diuretic will make her lose weight. Additionally, this PDA and heart murmer is not good either. She'll continue to be followed by a cardiologist and could eventually need surgery if the valve does not close up. But we'll cross that bridge if and when we get there.

She's currently 5 lbs 14 oz.....soooo close to that 6 lb mark. Dylan had a dr appt last Friday and he's 9 lbs 10 oz!! Whoa! He's a biggin'.

Some lyrics from one of my favorite worship song are heavy on my mind today: "I believe You're my Healer. I believe You are all I need.....You hold my world in Your hands"

Here's a few new pics of both kiddies.

100

Day 100. Ugh. Why? Why are we still in the hospital? 100 days of driving back and forth (28 miles round trip), 100 conversations with doctors, 100 pumpings, hundreds of blogs, hundreds of tears and millions of prayers. Our blogs are starting to get redundant. I don't even know what to write anymore. I have blogger's block now. You probably don't even like reading anymore. I HATE that Kaylan just has to lay in a bed all day every day...She needs more stimulation and she needs to be home. I'm frustrated that we've had a few nurses lately that we've never had before - which seems unacceptable to me at this point. I've been told "we can't make every family happy", so he who screams the loudest, gets heard, I suppose. I don't have the energy to scream.

Please join us in continuing to petition our Lord for fast, complete and total healing for our baby girl. It's starting to feel like we are in a wrestling match with God. As our pastor said tonight, sometimes God wants to transform our lives before He blesses our circumstances. I know He's working on me (us) and He's making us wait on His timing and His plan as He continues to transform. Lord, give me patience to trust.

Tap, Tap...Is this thing on?

Well here we sit on day 98 with our sweet Kaylan still in the hospital. I gotta be honest...this is REALLY getting old. She's STILL having difficulty with the bottles and STILL needing oxygen. Ugh. I have begged and pleaded with God for total healing and restoration in Kaylan. Don't get me wrong - she's overcome some massive mountains in her short life so far, but it's starting to feel like life is passing us by as she lays in the hospital each night. I'm kind of done with all of this...like, c'mon already. Let's pick things up a bit Jesus...snap, snap. Oh waiiit....yes, things aren't on my timing are they? You'd think I'd learn that by now. Well, either way, I'm thankful I serve a God that can handle my frustrations and tears, even if sometimes I do feel like He's not listening. Oops, did I just say that? Just being honest folks.

With each day that I go to the hospital, I'm more bonded to the other families that I know that have had similar experiences with babies in the NICU. You just don't understand unless you've been there. One of Landon's favorite pastors, Rob Bell (of Mars Hill Bible Church), said that people are united when they've gone through suffering. If you ask a crowded room of people to raise their hands if they've been to Disneyland, you might get some hands raised and a few smiles around the room...But ask that same crowd if they've ever had someone in their family die from cancer, or if they've lost a loved one and there's instantly a deeper connection among those with the same experiences.

So, as you continue to pray for Kaylan (as I know you are), please lift up the other 20 or so babies in the NICU at Plano Presby right now. I don't know all of the circumstances that have brought those babies to the NICU, but I know they need prayers too. I do know of two of the babies in the NICU that have recently had surgery within the last day or so....Surgery! Can you imagine the stress in those poor moms as their teeny tiny babies are operated on?! So thankful we have not had to go down that road. I hope that stays that way...forever.

My prayer for Kaylan and all NICU patients...

(Isaiah 58:8 NKJV) Then your light shall break forth like the morning, Your healing shall spring forth speedily, And your righteousness shall go before you; The glory of the LORD shall be your rear guard.

Road Trip for Dylan; Kaylan Going Tubeless....

Yesterday, we celebrated 3-months of life for Kaylan and Dylan. I think it has probably been the longest 3-month span in my entire life.  At no other time in my life have I had to juggle so much at the same time as I have over the last fourth-of-a-year.  It has been so crazy, and while I would not wish that anyone ever have to endure what we have over the last 90-days, given the chance to do it a different way, we would not change a thing.  Having said that, we definitely want to get our sweet Kaylan home and begin the next chapter of our life. Ninety days in the hospital is long enough!

Besides being the 9th anniversary of 9/11, it was also a big day for Big Dylan.  Jen took him out of town for his very first road trip (they went to East Texas for her cousin's baby shower).  He also went to church for his first time.  He did awesome with both.  He has demonstrated that he can handle an extended period in a car and he also proved he does very well in large crowds.  I wasn't sure how he would do at church, but given the fact so many people there have lifted him and Kaylan up in prayer, it was as if he was at complete peace.  He topped off his good day by sleeping 7 straight hours!  It's true, I actually got up twice to see if he was still breathing. 

Miss Kaylan, although now treated as lepper since being diagnosed with MRSA, also has had a good weekend. Despite having contracted the bacterial disease (NOT staph, just colonized MRSA), she continues to get bigger and stronger every day.  She has started to really get the swing of feeding and has taken all her bottles over the last 2-days.  She is still only getting 4 bottles a day, but that could increase in the next couple of days if she continues to suck down her food like she did this weekend.  They trialed her off of oxygen today.  We have been praying that she would do well and not have to come home on oxygen, but she showed she is not quite ready to kick the nasal cannula just yet.  They will probably try her off it again in a couple of days, so we will pray that her lungs can strengthen enough to graduate from oxygen assistance.  She now weighs 5lbs7.4oz!

Here is a couple of pics from the weekend...

Hermine, Code Black and MRSA

Well today was an interesting day. If you live here in the MetroPlex, you know we were flooded (literally) by Tropical Storm Hermine. The rains came hard and fast all day long. I guess you can say it rained on my parade. I had intended to go to Kaylan's Noon touch time, but the weather was so bad, I opted against it. Landon, Dylan and I all went to the hospital tonight for her 6 p.m. touch time. When I walked into the NICU, all the babies were lined up in the hallway (away from windows). The hospital was having a Code Black due to weather and concern over tornados in the area. So, Kaylan was being shuffled around as were all the other NICU patients. Things should be settled down soon after the warnings subside.

We also learned that Kaylan tested positive for MRSA today. They swabbed all the babies in her wing and she has it. MRSA is a germ that is no longer killed by certain antibiotics. It can cause different kinds of "staph" infections, including pneumonia, blood stream infections, and wound infections. Some healthy people can "carry" this bacteria for a long time without getting sick, but can still give it as an infection to other people. It's spread by contact (touch) with a person who is infected or colonized with it, or with an object that has the germ on it. What is the difference between infection and colonization? An infection is germs growing and multiplying and the body is trying to fight them. Colonization is germs living in a body, but not making the body sick. Everyone is colonized with bacteria in certain areas. Infections occur when these bacteria get into an area where they don't belong. Right now, Kaylan is not showing any symptoms of being sick. The doctors say the germs are colonized in her nose (where they did the swab). This is yet another thing we will add to our list of things to pray for in regards to her health. It just seems like our baby girl can't catch a break. We were told that another baby had it in the NICU and therefore they tested everyone in that wing. It's possible that a nurse that touched the other baby, also touched Kaylan and therefore transferred it. We can't be sure, and we certaintly wouldn't cast blame - heck, it could have come from Landon or myself, we just don't know. It's most known for being in hospitals, but these days it runs rampant in the community, day cares, playgrounds, churches, family, friends, you name it.

As for her feeds, she still seems to be stuck in neutral. She'll complete some of her bottles during the day, but not all. The developmental therapists still say she just needs more time. If she's still in this same position in another week or so, the doctors will regroup and see if they need to come up with a new strategy to improve things. Since she's now two weeks past her due date, they are really pushing to get her discharged soon. She's basically acting like a 35 weeker now. Her weight is now 5 pounds, 1 oz. Weight gain is on the right path, although she's still loaded up with extra calories, fortifiers and thickeners. When she does come home, I will have my hands full just trying to mix the concoction of ingredients for each of her bottles. I'm tired just thinking about it. It's a reminder that to me that just cause she comes home, things won't necessarily be "normal". Kaylan is likely in for quite a rough road for the next few years. She's been behind the 8 ball from the get go, and things don't just come easy to her. Here's hoping she's got her daddy's determination and her mom's strong will to do things her way ;)

I know we probably don't even need to ask you to pray...but we'll ask anyway. It's all we've got...and prayers have been answered time and time again for these little miracles. We're continuing to trust.